Learning With Ulcerative Colitis

My name is Julia, Christian, 28, and I was diagnosed with Ulcerative Colitis on May 9th, 2015. I’ve been on Asacol, Mezavant, and Azathioprine, went into remission on Remicade for over 2 years (broke through), tried Stelara which didn’t work, and currently trying Humira/amgiveta and of course I’ve had my fair share of Pred and other steroids. Feel free to reach out, no such thing as too personal, or too descriptive. You may also visit my personal blog foreverhopes.tumblr.com

[colitisconfessions]

Short but kinda long update;

After being in remission with Remicade until 2020, I’ve been on Stelara (we thought was working but then immediately wasn’t), then switched to Humira biosimilar called Amgevita which never worked, but last scope in January of 2022 didn’t show enough inflammation to warrant a medication change. Tuesday I had a flexi-sig that showed significant inflammation so we are now in the process of starting Entyvio. I am really hoping and praying that this is it - I miss what life was like on Remicade, until I broke through. I don’t even know what I’ll do if life is like that again. I’ve just been flaring or on prednisone for the last three years.

I know everyone is so different, but if anyone has any advice, tips, tricks etc regarding Entyvio I would appreciate it - but please be gentle with me I’m not really in a place to accept failure stories right now.

[theroyaltenenblarghs]

My city keeps building “accessible” playgrounds for children but they don’t have an accessible public toilet on site or nearby.

This very thing means that all of their efforts to make things accessible are for nothing.

Many disabled people need to have access to public toilets for various reasons (I might add that you are not entitled to know why someone does)

If a public toilet isn’t close enough then a person can’t utilise that space.

You can build ramps and do whatever you want but if there isn’t an accessible toilet nearby…

It’s not fully accessible

[colitisconfessions]

Stelara didn’t work, and Humira/Amgevita isn’t quite working yet. I had pneumonia & pleurisy in Oct/Nov so I was on quite a few rounds of antibiotics. I never know if that changes how IBD meds work in our bodies and my doctor can’t tell me either.

This flare up is awful, I borderline begged for prednisone which I got. Im decreasing every 3 days instead of every 7, so we’ll see how it works. I’m terrified to be even more immunosuppressed given the state of the world we’re in. I’m exhausted and frustrated, and it’s hard to not dream about the days I was on Remicade and living a completely normal life. It was incredible. It feels like a different lifetime. I’m scared and I don’t know what it’s going to look like from here.

I have a tentative appointment to get a sigmoidoscopy first week of January, so we’ll see what that shows, but there’s a good chance that I break down in my GI’s office….

[octoburfrost]

Isn't just absolutely awesome that this disease makes it so we can't eat? We eat food, and suddenly, for no obvious reason, our guts just completely revolt.

Like oh you wanna feed yourself? Like a human? You wanna take in sustenance? Ahaha NO. Have fun spending the next day on the toilet shitting out your entire digestive system.

[colitisconfessions]

I haven’t been in remission since 2020, I’m on my second new medication. It hasn’t kicked in yet. I can usually hide my flare ups from my friends, and I’ve gotten really good at it too. Tonight I couldn’t, I have zero control anymore. I feel less than human.

[foragecore]

honestly at this point they should just euthanize me

[foragecore]

my tummy ache went away. post cancelled

[blennie]

woah woah ladies, settle down...... (talking to my digestive organs)

[adekid]

[thelatestkate]

Shop, Patreon, Books and Cards, Mailing List

[nymphaticc]

[doctorguilty]

mutuals meet me in the exhaustion funnel 

[blindedbythedarkness]

[kbfoto]

[chronicallyjeepsy]

[colitisconfessions]

Little update;

So between my GI and I, we came to the conclusion that I should switch to Stelara. I’m not feeling too many emotions regarding Stelara specifically, but the idea of changing the medication (Remicade) that I had been on for 4 years, that gave me my own new normal, that allowed me to reach remission, is a weird thing. I can’t describe it, and I’m really struggling to process it. I thought we had gotten passed my flare up (we haven’t, I just have less severe symptoms now after being on Pred), but my blood work showed I had developed antibodies and Remicade wasn’t working for me anymore. I feel like I failed, and that I’m going backwards, and I’m trying to get passed those feelings.

What I thought was going to happen in a few weeks, ended up being tomorrow. I got a call this afternoon and there’s an open appointment tomorrow afternoon at my usual clinic, to get my first dose of Stelara via IV before we begin the self injections. So I guess a positive is I don’t have any time to over analyze, and stress myself out over it. I’m also done Prednisone on Wednesday, and was anxious about worsening symptoms, but not having to wait is nice.

I really didn’t think I’d need this switch so soon, I didn’t think I’d flare like I did. But this is all part of the whole autoimmune disease thing.

P.S. there’s like nothing on tumblr about Stelara?! I can’t find any blogs or posts about Stelara, specifically when used for Crohn’s or Colitis. So my messages are open if anyone has anything to offer...

[colitisconfessions]

So I got a call from my GI’s assistant, my “drug levels” came back from my most recent Remicade infusion, and they’re “not good” and she wants to talk to me about “switching medications”. I have a phone appointment Tuesday morning to talk to my GI, to find out more. After 4 years on Remicade, with only this most recent flare up, this is terrifying, anxiety-inducing news. After spiraling a bit with my fiancé, he reminded me that I trust my GI, and if I end up being switched to something like Humira that’s a self injection, I may really like the control I get over my own body.

If anyone has any advice, or experience in this, I’d really appreciate some help! I know everyone’s experience is different, but it can be scary going into this blind.

[colitisconfessions]

It’s weird being in a flare up, at the same time 5 years later, as when I was diagnosed and began this whole journey.

I am so incredibly thankful to those who had blogs before me, and helped me navigate what is so scary and isolating. Someone who had had this procedure, or been on these meds, could reach out and provide another voice. The amount of people I have talked to, who have made me cry, and helped move me forward, is incredible.

I’m thankful for this blog, and for everyone who’s here, and has their own.

[lifeaccordingtocrohns]

Saw this on Facebook and laughed a lot. Had to share!